My Shaking Made Me Feel Like I Was ‘Going Nuts!’

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on essential tremor and raising awareness. Please share these stories with others.

By Jody,

My tremors started when I was 21. My daughter was almost one-year-old when I noticed my head feeling like it was shaking inside but not noticeable to others. I went to my regular doctor and said, “I think I’m going nuts… I feel my head shaking and it’s not stopping.”

My doctor sent me to a neurologist who tested me and I got the diagnosis of tremors. At that time it was just my head shaking; but it went from not noticeable to others to very noticeable within six months. I was prescribed an anti-seizure medication.

Then I also started doing my own research on essential tremor. My mother-in-law saw an older lady in the hospital waiting room one day and noticed she shook just like me. She started talking to her and found out her doctor prescribed Botox injections. So I made an appointment with that doctor who diagnosed me with both essential tremor and muscular dystonia. She prescribed many different medications including muscle relaxers, and most of the medications had bad side effects.

After a few years I started Myobloc injections. Those worked for about nine years. I then went to the Mayo Clinic to explore the option of DBS surgery but decided against it.

I went a few years without seeing a doctor then found another specialist. We again started the process of trying to find a medication that would help relieve my tremors. Today I have exhausted all of the medications out there that they use to treat tremors.

“Over the 20 years of me having this I now have tremors throughout my whole body. My head shakes, shoulders, trunk down to my legs. I do not stop shaking at all.”

I am now doing Botox under an orthopedic specialist. I also see a chiropractor and use CBD oil when the Botox runs out of my system.

I work in an office setting full time and have a cleaning business on the side so I work seven days a week. In my office job we have changed a few things to help me get along easier. I have been at this job for 22 years so they have seen the tremors progress with me as the years have gone by. I use weighted pens and pencils. I have a standing desk now so I can move around as much as I need to. I feel better the more I can move. If I’m not working and just laying around at home I hurt – my muscles hurt, my body hurts. But, I can still move. Some days are harder than others. Writing is getting harder.

I’m amazed at how many people have had this condition their whole life. I sometimes have to remind myself of the people who can’t work or can’t write at all because of their tremors. Mine are bad but others have them much worse than me.